Friday, July 15, 2011

What about me?

I knew the post on depression and anxiety would strike a chord with readers.

A week ago, while we were in Chicago, I had a bit of an epiphany. Not only was I filled with angst about my son’s future, grief that he won’t follow the conventional path, and anger at the injustice of it all, but I was also worried about me.

Yes, I want my son to have a good and rich life. But I want to have a life too.

I know that’s not something we parents acknowledge often. It seems awfully selfish. Guilt prevents us from talking about it. But when a child won’t be independent as an adult, it’s hard not to picture your life subsumed by their care.

“My son is turning 30 next week and I’m having a difficult time with it,” DeeAnn said in a comment. “While other parents my age are becoming empty nesters, I am still dealing with a ‘child’ who is completely dependent on me.”

Much of my day and head space is still spent caring and advocating for Ben. There’s a school lunch to be made, help with dressing and medicine and leg stretches in the morning. After work, I sit with him to do Kumon or send an e-mail or read Harry Potter or get him to answer questions with one of his Proloquo pages – which I design by downloading photos and creating the grids.

There are numerous e-mails and calls related to school advocacy (more on that in an upcoming post) and funding. I have hired Plan Toronto to help me develop Ben’s support network.

And now we’re exploring a voice device for him. I know from the ones we’ve abandoned in the past the tremendous amount of time that goes into setting something up. Of course it would all be worth it if there was an intuitive system that was easy to use, but I haven’t seen one like that yet.

There is lifting him in and out of the bath, or carrying him up the stairs on my back (even though I’m not supposed to, and he can walk now). Washing his hair.

I still have to close the bathroom door for him because he forgets, and remind him to wash his hands and his face, and clean his eyeglasses and give him his hearing aids to put in. I still have to change said hearing aids' batteries.

He can’t go outside on his own or travel the TTC, or use the phone. He can't be left on his own.

He goes to camp for a month this Sunday, and while I know I need the break, I know I will miss him terribly. And worry about him and whether the worker with him can multi-task the myriad of things that need to be managed to get him through the day.

But till age 21, he will have school during the day which gives us a structured break. After 21, I feel that I have to magically whip up seven meaningful days a week – with things like volunteer work, recreation, continous learning and maybe even some kind of job (or business – that’s what many parents do, create a full-fledged business that their child can work in or own).

I’m trying to rein myself in and just focus on the next year, while doing some long-term planning (such as the support network).

But in Chicago, I couldn’t help feeling that when my child is an adult, I want some kind of natural separation, some space for myself.

I think it’s one thing to create an adult life for your child with disabilities. But it’s quite another to do that AND have your own interests, activities and private time. To follow your own dreams.

The pic above is of me on a Bixi bike in downtown Toronto. A couple of months ago D'Arcy and I had a worker stay over for the night and we went to a hotel. We spent the afternoon riding along Queen St. W. on these bikes and I felt like a carefree teenager (well, if you know me, I've never been quite 'carefree!')

I'd love to hear from parents who have struck a good balance between caring for themselves and caring for an adult child with disabilities. Louise


Louise, I'm also very interested to read what these other parents have to share. My husband and I plan to keep our daughter (total care, non-verbal) with us her whole adult life, Lord willing.

On one hand, it's reassuring to know she will be lovingly cared for. Residential care terrifies us, from outright abuse to the staff overlooking small comforts that make her world pleasant.

On the other hand, the thought of 40 years' worth of "whipping up 7 meaningful days a week," as you so aptly put it, is overwhelming.

So I tend not to think about it. This is poor planning, not only for our daughter but for ourselves. She'll be out of school in 6 years--a heartbeat, really, given how fast time races by. If she AND we are to enjoy a meaningful future, we need to be taking steps towards that today. Those comments from wise, balanced parents will be very helpful!

I'm happy you posted this, Louise. It makes me feel a tiny bit better to know I am not alone; that there are other mothers who may be having their own private tug of war in their hearts and in their minds.

Thanks for writing Rose-Marie. Does your daughter have a support network?

Ever since my son Ben was 4, people have been telling me that this is a great way to ensure a secure, happy future for your child, and one which doesn't just rest on your shoulders.

But I never wanted to ask people for help, so it wasn't until my son was 17 that we finally had a life plan day for him. And now I've hired a group to help us develop his support network.

The network will probably meet every couple of months and have a variety of folks in it -- friends, neighbours, workers, peers, people we know who have great connections and can help connect Ben to activities in the community. Anyone who has taken a special interest in Ben.

There is a wonderful book published by Plan Toronto -- you can get it on their website -- it's called A Safe and Secure Future and it has sections on planning related to finances, home, friendship, activities, etc. It has useful worksheets that get you thinking about the different topics. I would recommend it highly.

It's also fun to get as group of people together to identify your child's strengths and dreams and to include your child.

Will you write us a guest blog sometime??? Louise

Hi DeeAnn -- of course there is a struggle, because you're human, right?

A therapist I saw kept suggesting that anger was at the root of some of my problems but I could never identify with that. Anger? That wasn't me. Anger wasn't an acceptable emotion. Grief or guilt or worry, yes, but not anger.

And then it hit me in Chicago that anger was indeed what I felt. And that was okay.

And it was freeing in some way to admit that I do need a life as well -- that my entire life can not be lived for my son.

Why don't you write us a piece about how you feel as your son is about to turn 30? I'm sure our readers would love to hear about it. xo

My daughter is four and I've been thinking about her future pretty much since she was diagnosed. I am a planner though and I find most of the people we work with find my questions a bit odd and unnerving.
When she was one we attended a conference and met several families of adult children so I have some ideas about what I would like and how that would work out.
I think a lot about making sure we find balance in our family and on the whole we are really very lucky in terms of the resources we can access and the support workers and other families we have been lucky to connect with.
Thanks, as always for sharing your thoughts and resources here. It was great to see you yesterday!

My son, Jack, is 13 years old and lately I've been worrying a lot about what will happen when he is an adult. Jack has a rare form of muscular dystrophy which has rendered him essentially a quadriplegic. He is ventilator dependent and requires 24/7 monitoring and care. The only choice for Jack other than our home is a nursing home and I can't let that happen. I worry about whether I'll still have nursing for him in the home (which we get now) and whether I'll be able to physically care for him. Yet, I know if he ever ends up in a nursing home, that will be the death of him. It's really a double edged sword -- taking such good care of your medically fragile child so that he lives into adulthood and then having to worry because he does survive to adulthood. It just stinks all the way around. I currently have the ability to go to work every day and do things outside of our home because I do have nursing - and a very involved and supportive husband. As for the future ... I don't know. I do know that respite for parents of children with special needs is imperative and the very reason I established a foundation to provide respite opportunities for parents of medically fragile children. The Willow Tree Foundation.


Louise, thanks so much for the encouragement to look into a support network for our daughter. It would be wise to do that now.

A number of years ago, I had the opportunity to sit on a support network for a young lady as a family friend and it was an amazing experience. Of course, back then the time that our own daughter would benefit from such a thing seemed so distant...and now, "tomorrow" is quickly becoming "today."

Thank you for the suggestion to look up the Toronto Plan site. It looks like they are really leaders in life planning. What we have available to us in the US (for a premium charge, unfortunately), appears to be based on the work coming out of Cananda. We need a Jack Pearpoint and other wonderful leaders here in the USA.

I'd appreciate the opportunity to write a guest post for Bloom. Thanks so much for the invitation! I'll email you for details.

Louise- I wrote a post on my blog today called "Today, I Cry" if you want to check it out. It's all I could muster up.

Oh, wow. I started to write a comment and decided to just turn it into a blog post. I'll let you know when I compose it. :) Thanks so much for this post.

Hi Angela -- I can't wait to read your post. I am glad to see you are back in action on the blog! xo

Rose Marie don't let your fears stop you from applying. You are only human and you will NOT be a sane parent without respite care. You should always tell the carer all about your daughter's needs and personality.

I applied for respite care and I was successful. It was by far the best thing I ever did. Respite care was a godsend to us too. It made me more sane and benefitted all of us. My other daughter Anna was happy that I was able to play with her. Usually my time is spent working and looking after Abby.